Separated by a common language : cognitive interview study on the Integrated Palliative Care Outcome Scale for People with Dementia (IPOS-Dem) in the acute care- and district nurse-/community home care setting

Background/aims: People with advanced dementia (PwD) are affected by symptoms and needs that are challenging for nurses and relatives to elicit. The UK-developed IPOS-Dem, translated/culturally adapted into Swiss-German for the acute care and community care setting, is a holistic, person-centred measure to aid caregivers to identify symptoms and needs. Comprehension of the IPOS-Dem needs to be tested before more detailed psychometric testing. Methods: Nurses with diploma/university degrees and relatives over 18 years were purposively recruited. Rounds of a maximum three cognitive interviews were conducted. Thinking-aloud- and probing questions, based on Tourangeau’s (comprehension, retrieval, judgement, and response) model, were applied with each participant. Interviews were transcribed and analysed from audio file by two independent researchers. Inconsistencies were resolved by consensus. Results: Eight interviews in three rounds were completed in Spring 2021. Two relatives, three acute-care (ACNs), and three district nurses (DNs) agreed to participate. Participants welcomed the clear and understandable instructions, and description of all items. ACNs and DNs differed in judgement of items, from being able to assess the PwDs need at all (e.g., feeling sad, enjoying things), to interpreting a symptom or need, and having different concepts in mind (e.g., agitation, wandering). Retrieval difficulties and differences between ACNs and DNs were identified in psycho-social items (e.g., ‘feeling at peace’); ACNs were reflecting on the PwDs overall life, whilst DNs were thinking about the present and how the PwD is affected by it. Conclusions: The IPOS-Dem has been adapted in culture and content validity, with Swiss-German versions developed for both the acute care and community care setting. Although the versions do not differ substantially, the implications for teaching- and implementation of the IPOSDem into routine care diverge considerably.